The degranulation events are a huge part of living with mast cell disease, no doubt, and they dominate my every waking moment as I either struggle through them or obsessively try to keep them from happening in the first place.
There’s so much more to living with mast cell disease than just the degranulation symptoms, though. For one, it’s an incredibly isolating disease for many reasons, including trigger avoidance. Walking through a crowded mall is just not an option for me anymore, unless I want to pay the price afterward. Friends and family have to be careful not to wear strong scents or get me too emotionally worked up or leave Cadbury eggs lying about (grr!).
When it comes to food, I can’t go out to eat and really enjoy it anymore and I suffer from food anxiety and cravings from hell for foods I’ll probably never, EVER (!) be able to eat again. I have to constantly plan ahead and make sure I have enough “safe” food if we leave the house for an extended period, when we actually do leave the house these days.
I can not work outside the home, which means I am home all day and we live on one income. It’s impossible not to resent being stuck at home all day due to boredom alone, and even though my hubby is incredibly supportive I still feel guilty not being able to contribute financially. There’s the added guilt of having a rare disease that costs us a lot to manage on top of rendering me unable to work, not to mention the mother’s guilt I feel for passing it down to my child(ren), one of whom also can’t work and is struggling with his own mast cell disease right now.
I had to give up driving, something I love doing and don’t know if I’ll ever get to do again. It’s quite indescribable, really, knowing I have to rely on my family or friends to chauffeur me around, mostly to doctor’s appointments, possibly for the rest of my life. Even if I could drive, or walk through the mall, the fear of fainting and having a seizure is always there. I don’t want to embarrass myself (or worse) in public.
I feel utterly defeated by this disease when I realize I’ve had to give this and so much more up. Things like hiking into the back country, soaking in the hot springs or even swimming in a chlorinated pool were all things I loved and are just a few of the things that are now on my “Forbidden Activities” list.
It’s a costly (and incurable!) disease, as I already mentioned. There are visits to the specialists, expensive tests, checkups every few months and six (seven if you count coffee!) medicines that I have to take daily, for the rest of my life!
Then there’s the food expenses. I have to eat fresh, organic (aka high priced) foods and I have to cook and bake from scratch for nearly every meal. That means buying more kitchen things and more wear and tear on them.
From the outside, I look like a very spoiled, pampered housewife who gets tons of packages and almost daily grocery deliveries and doesn’t have to work or even lift a finger outside anymore, since the gardening is mostly done by the hubby these days (at his insistence). He won’t let me pull weeds or do much more than sit in a “safe” spot in the shade, decked from head-to-toe in my anti-wasp gear, holding my Epipens in one hand and my cell phone in the other where he can keep an eye on me, just in case of another close call by insect sting.
At least I feel loved. 🙂
Sometimes, if I am careful and the stars are aligned, I can get myself down to just a few symptoms or even none (!) for brief, blissful moments, but most of the time I’m not able to keep from being triggered despite my best efforts and the merry-go-round continues.
I wake up every single day facing the reality that if I don’t take my medicines right away the symptoms will slowly creep back in, regardless of what I do, and I am just a few pills and potions away from being utterly and completely debilitated and in so much pain and misery it’s enough to make me just want to die (!) at times.
I could be stung by another wasp and actually die the next time. They love my yard as much as I do and come by the millions each year so the risk for me living here surrounded by my beautiful flowers and trees is very high.
I also know that at anytime I could become “immune” to my medicines and I could get sick again anyway. I can also get worse as I age and there may not be enough medicine to counteract the symptoms from things like being “allergic” to my own estrogen. The future is completely uncertain for me and it scares me.
There are other feelings, too, that come with having mast cell disease, some of which are surprising even to me. I find myself being much more humble and grateful, two emotions that thankfully don’t trigger mast cell degranulation, and I am learning to ‘love the simpler things in life’ and to ‘relish each moment’ because now they aren’t just cheesy sayings. I know how quickly it can all be taken away from me.
I also have been able to gain a different perspective of my birth family and my dysfunctional upbringing when I realize that this disease most likely runs through my maternal line. My difficult relationships with my siblings and my mother in particular make a lot more sense when filtered through the lens of us being a family with mast cell issues.
I can’t say I forgive my birth mom for some of the ugly, abusive things she did, but I can better understand her frame of mind knowing now that she was probably as sick, if not worse, than I am and was struggling just like me. At least I know what’s wrong with me where she lived a life of pain and suffering, much like me, and died never knowing. I carry a lot of guilt for the way our relationship ended before she died, but I also can now put it to rest, so that’s one positive thing to come out of all of this, I suppose.
As you can see, there are so many facets to having mast cell disease and I could write a million more words describing what it feels like to live with it. My experiences may be similar or completely different than the next victim, er, patient, and I find that fascinating, consoling and sad, all at the same time. Around the world, in every class, creed and culture there are people whose mast cells are giving them grief right now. I know, because they show up in my list of countries who visit this website and believe me, it’s global.
One thing we all have in common aside from having MCAD, though, is that our lives are more than just impacted by our mast cells. They are often directed, if not entirely controlled by them and for me it feels pretty overwhelming at times.
How about you?